Newly dignosed with Bechet's

Newly dignosed with Bechet's

Yesterday I was diagnosed with Bechet's. I was no way expecting this. I don't totally understand though. I don't really get ulcers in my mouth and I thought that was a big symptom. I had a lesion on my brainstem which has caused me hell.The neuro said the area of inflammation was consistent with bechet's. I have lost alot of teeth due to abcesses. My gums swell up something awful, my joints swell up and hurt. Fatigue is an understatement, I feel knocked out at times. But again, even though my eyes get irritated and sore and gritty, they dont get like some of the pictures I have seen of people with bechet's. I had a pinprick test and 48 hours on its red and bruised looking, but not a massive lump. I do get genital sores but I thought that was herpes. Ok, I am sorry for appearing stupid but I am very confused about the whole thing. They have started me on conchicine...(I think thats what they call it)...Any advice...thanks .

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  • Hi there

    This all must have come as a shock having only been diagnosed since yesterday. Your head must be realing a bit and it is only natural to ask yourself many questions. We are all different here and you will see that our symptoms are not all exactly the same and/or started the same.

    My first symptoms were not ulcers in the mouth and although I do get them, they are not my biggest symptom and I get the gum swelling as well. I was as first diagnosed with herpes when I was very young, but by sight rather than proper tests and so my Doctors said that it was more likely to have been the start of behcets.

    I also have neurobehcets which has affected my brain and spinal cord and this is particularly rotten and so I know what you have been going through.

    You will also see that most of us have the terrible fatigue and of course the joint swellling and pain and lots of other symptoms in common that are not down in the medical books for behcets.

    The pin prick test doesn't happen on all people but it sounds as if it was inflammed. I get a lump/pustule with blood tests and so the doctors accepted this as a pathergy test.

    As time goes on things will start falling into place....I hope the colchicine works for you.

    feel free to ask anything.

    Andrea

  • Morning, my daughters Behcet`s took them 4 years roughly to diagnose, hers started with what we thought was tonsillitis but got progressively worse until she was hospitalized for 5 weeks seriously ill, they still are to this day struggling to get all her symptoms under control, but you have found a wonderful helpful friendly site where nothing is too much trouble. Take care. x x

  • Welcome. Post diagnosis can bring relief, shock, bewilderment - all sorts of things. It's a lot to take on board. As said earlier we don't all have the same symptoms and fortunately remission is possible, as is management and control - this can take a while as which meds work best for you and learning how to live with BD can take a while. You won't get every symptom you read about, some of us won't get all the sypmtoms you have, so please don't worry that you don't have this or you might get that. No-one here can give you medical advise but we all understand what you are going through and can offer support and personal experience. If you haven't done so already, I suggest you have a look around the website - you will find loads of helpful info there.

    You don't say how you got your diagnosis, and you might know this already, but if you are in the UK you might be interested in the Centres of Excellence. You can find out more about them by searching Centre of Excellence in the search box and by reading about them on the Society website. If you type in words associated with your post - eg Newbie, newly diagnosed, diagnosed today, that sort of thing, you will find other posts on this subject and you might find some useful info there.

    Keep posting! x

  • Hi there, Firstly, a big thankyou to everyone who replied. I think I am going to need this forum as it looks really helpull and you guys are really supportive.

    I am going to explain my story or journey as it were and see if anyone relates.

    I started to feel unwell just over 11 years ago. I became extremly tired and a feeling of general weakness. My legs felt heavy and there were times when I just couldnt carry on shopping or doing whatever would be normal day to day things. I became dizzy and as a result of being on the point of collapse one day I ended up in hospital being monitored. It was then decided I should have an MRI. I was sent to a neuro and had a scan done. The scan came back abnormal and showed a lesion on the brainstem. My neuro told me it was a brain tumour. My gp thought it was MS. Anyway time went on, I felt a bit better, then one morning I got up and felt terrible. I could not put my finger on how I felt, I just know I felt terrible. I drove my children to school and as we said goodbye I collapsed. It was all in a split second. I thought I was having a stroke. The left side of my face dropped, I couldnt walk and my eyes could not focus, its like they were spinning. My neuro was phoned he suggested I was taken to hospital asap. Once there, they said its not a stroke, but at the same time they didnt know. They said t could be MS, but I didnt fit the whole criteria for it. I spent an afternoon there and was sent home. For the next for months, I couldn't walk unaided. I was either in a wheelchair or had to use a stick. My bowels didnt wor properly, my speech was slurred from time to time and life was hell. The headaches were like migraines, I became light sensitive, muscle spasms and so it went on. I had no help as nobody really new for sure what it was. I slowly slowy came through but have never been the same. I lost alot of teeth over time, I had endless infections in my gums and abcesses. So now I am out of work as I cannot hold a job down. Anyway, we moved north because of my partners job and my gp reffered me to a new neuro. He sent me for another scan and this time it came back normal. He said "your fine, don't know whats wrong with you, its definatley not MS, so I suggest you see a phsyciatrist!"...He then said he believed that the original scan I had done was actually an artifact on the scanner and nothing had ever been there. I was shocked and didn't know where to turn. In the meantime I was sent for a lumbar puncture, it came back positive, showing elevated protiens etc. He said "oh its just an infection, nothing to worry about. He was so horrible to me and made me feel like a total fraud. I became increasingly low as I felt maybe this was all in my head. I became ill again, only this time it was gastric. I think I had gastroentoritis, but it hit me a thousand times worse than I have ever seen in anyone. My GP came out three times to see my, and said at one point, "I dont know what to do apart from give you anti sickness pills. I lost 3 stone in one month and I can quite genuinly say I thought I was going to die. I became so weak. My voice was weak, it was awful. Eventually I got through it and I mentally hit an all time low. I went to my GP and explained I was finding this so hard to deal with, always being ill or feeling ill with one thing and onother. He said take anti depressants, I didnt want to, I just wanted to talk to someone, to be heard. But he insisted and so put me on Prozac. Two weeks into taking the drug I felt really weird and heard voices. I ended up having a full blown phsycotic breakdown and put on a mental health ward. That was it, I was well and truly broken. Half way through my stay, my neurologist paid me a visit just to reafirm to me that he was right and it was all in my head. The staff said this breakdown was due to the prozac and I wasnt mentally ill, infact I was becoming physically unwell again and needed to be moved to a general ward. The damage was now done, no one believed me, they said I was mad. My health continued to deteriorate, I had this parkinsonion shuffle when walking, my joint ached so badly, my back was bad, I was becoming stiff and still losing teeth. I had brain fog and was a mess. It took me two years to get over this breakdown that was caused by prozac. It left me with panic attacks, fear of going out and half the person I was. In the meantime, my gp would put me on steroids evertime I had a flare, I was a complete guinea pig for something they just didnt know. I learned to live with my symptoms and not go to the doctor. I have never suffered badly from mouth ulcers, but I was diagnosed with herpes many years ago. They said it was one of the worst attacks they have ever seen and I was pretty bad.

    Eventually I got my strength back mentally and asked my gp to refer me to a good neuro outside of this area, he got really angry and said"you have fibromyalgia, live with it. I stood my ground and eventually he agreed. I saw the guy who said he was under the impression the lesion was an artifact on the scanner. I said have you seen the original scan, he said no. I then spent 6 moths chasing up an old archived scan to try and prove my case. Eventually with the help of a wonderful woman in the hospital where I had it done, she found it. She sent it to my neuro. Meanwhile he reffered me to a rheumy and she was lovely. She listened to me and said come back in 6 months. I went back this week. She said she had spoken to the neuro and he had looked at my original scan. She then said its consistent with Bechets. It was an area of inflammation that is usual in neuro bechets. I expalined I dont really get ulcers in my mouth but told her the whole history. She has now put me on to Colchicine and said see if this helps. I get headaches, night sweats, joint paint/swelling, genital ulcers from time to time along with a whole host of other physical symptoms. I still cant beleive I have a diagnosis. Its been such a long road I am waiting for someone to say, ha ha, its a joke!.....I am not trying to be in denial but I read of other people who seem to have loads of ulcers and I dont. Anyway, I hope none of you mind me telling my story, its also good to vent. I dont have a lesion on the brain anymore and my neuro symptoms have improved, but I still get flares from time to time and the tiredness never leaves me as with the painfull joints and stiffness. does this sound like Bechet's?...Thankyou for reading.

  • You poor love, no-one here can tell you if it is BD, certainly you have some of the symptoms and but there are many auto immune conditions in which the symptoms cross over. There is some info about this on the Society website: behcets.org.uk/menus/main.a...

    Your history is not at all unusal (sadly) and you are not the only one to be told you have a psychiatric problem, to be told different things by different docs or to break down - it's not surprising after going through all that - all you want is someone to believe you and help you to feel better!

    There is no definitive test for diagnosing BD, it's down to a combination of things - history, presenting symptoms and the expertise of the person who is treating you. There are things that can show up, such as the lesions etc., but it's still difficult to diagnose. If you are happy with the Doc you are seeing now then stick with it, but if possible I still recommend you go to a Centre of Excellence - with experts in all areas of BD under one roof at the same time you are more likely to find out for sure and also get help, support, advice and whatever you need.

    You may find it helpful to keep a brief factual record of symptoms

    ie, not I felt fed up on x date,

    but date - genital ulcers,

    date - aching joints and so on, with a brief overall summary of how you got to where you are now, again factual,

    ie, date, saw Dr x, diagnosed with Y

    and to have some factual information about BD with you, such as this

    :http://www.behcets.org.uk/Documents/effects%20of%20behcets.pdf

    You may never need it, but you know from experience that not everyone will take you seriously and not all docs are clued up about BD.

    If you can get any copies of clinic letters and test reports that will also help you to build up a picture and have to hand if needed when seeing any doc. Quicker than answering loads of questions (if they ask the right questions in the first place) and easier than trying to get them to access previous notes.

    BD is currently incurrable, but it CAN be treated, sufferers CAN learn how to manage it and CAN go into remission.

    If you haven't done so already, I suggest you join the Society - they offer a wealth of information and support. Take some time to have a good look round the website and see what you think.

    Please bear in mind that this is not a medical or professional response, just one from a fellow sufferer who knows the stories of many others.

  • Welcome to the the blogsite. I know you must be feeling very bewildered, but we are here to support you in any way we can. I think all the above have said what I would have said.

    If you need any general questions answering, post away. x

  • Oh, my darling girl! What a sad and desperate tale. Sadly, we have a lot of similar tales in oursmall group. Tiger has given you the practical advice you need atm - although I'm not certain you live in UK if you don't, of course, the advice 're centres of excellence won't apply everything else should though.

    We are a very small but tightly knitted group, specially considering we are not so very old. Each of US has experienced some of what you describe and we understand what you're going through? Please keep talking to US? You've comets the right place xxxxx

  • Sorry bout the typos, blooming new phone!

  • Hi Phoebe. I have possible behcets...my main issue was that the joint pain and inflammation in so many areas of my body was preventing me making a return to work after a 9 month absence following a "stroke" like onset like you describe.

    I started on colchicine around 3 weeks ago and the improvement is superb..huge reduction in pain and I have the reverse to you...no genital ulcers but mouth ulcers. Since taking colchicine they start up, but then seem to calm straight down and go.

    Sorry for you having a diagnosis, but I hope the colchicine works for you as well as it is me.

  • Hi Phoebe, I'm new to the diagnosis too. And they put me on colchicine, which helped 6 days after taking it, though I still feel some pain.

  • Goodlife and Kimber - really pleased to hear your good news and thanks for posting. Positive news is always very welcome here. :-)

  • Hi Phoebe

    Welcome and poor you!! My main problem isnt ulcers and as you have read the above, we are all very different. I initially had genital and mouth ulcers and was told I had herpes. I got my diagnosis 3 years ago after years of feeling unwell. I was puton Colchicine but unfortunately it didnt agree with me and now take a cocktail of other drugs which keep me coping. I work and although am in daily pain I manange ok!

    Having a diagnosis has helped me get back to feeling relatively well. I ache daily and am always tired and get ulcers on my chest and head but there are many drugs out there that can help you.

    Keep your chin up and remember we are always here to listen!

    Angela

  • Thankyou to EVERONE for taking the time to reply, it's so kind. Like wise my heart goes out to you all for having to deal with this illness. I have tried many times to return to work only to be beaten down by this dam thing again and again. I am in receipt of benefits, of which I don't know how long will last. This does worry me greatly as without it things would be even worse. I get the higher rate of disability as there are times when I am in a wheelchair and can do literally very little for myself. How do I stand on this, does anyone know and are any of you in the same situation. Any advice would be greatly appreciated...many thanks...

  • Welcome to the site. Sounds like you have had a long traumatic journey, seems to be the way with a lot of us on here. It is a fab place here where you can ask anything and its full of information and experiences.

    Jo xxx

  • Phoebe I qualified for DLA, but due to having no diagnosis I only got an award until 2013.

    On the letter you received telling you that you would receive the benefit, there should be an end date. I think the situation is reviewed before the end date in terms of how you are medically, and a decision made then to whether or not you can keep the award.

  • Hi Goodlife, I was awarded DLA indefinitely. I was so I'll when I got it, and they messed me around. So I got my local MP involved and they suddenly got their act together. So I'm not sure if indefinitely means indefinitely. Or will I have to be reassesed. Either way its a worrying time for people that are genuinly poorly and to fight for it...

  • From 8 April 2013, a new benefit called Personal Independence Payment (PIP) will replace Disability Living Allowance (DLA) for disabled people aged 16 to 64.

    If you’re aged 16 to 64 on 8 April 2013 and you get DLA, DWP will contact you between October 2013 and March 2016.

    This will happen even if you get an indefinite or lifetime award of DLA.

    More info here:

    gov.uk/pip

  • hey hun ur story is so similar to mine, passed pillar to post,

    my worst symptom is the joint and bone pain, i have it 24.7 whereas the ulcers come and go with a flare. the fatigue is another persistent symptom.

    I would definitely recommend the centre for excellence, but if u like your new specialist keep her too... its always good to have a second opinion on things.

    it definaltely sounds like behcets to me, however it shows diff in us all.

    i was only diagnosed in sept. on the 27th, and they are considering that i may have something else alongside it due to my severe limitation in mobility and the aggressive pain levels.

    I have just applied for DLA and am waiting to find out if successful. Iv been successful on getting a blue badge for three years.

    I need a walking stick for round the house and for journeys that are just from car to say front door, or a relatives house, for shops i use their scooters and on longer journeys i am in a wheelchair. i was 27 in July and it was a huge change to go from being a lively active 26 year old hyperactive needing no sleep, to being disabled, ill, in pain and tired allth e time. just dont feel or look like my old self.

    iv always had varying symptoms thru life, however non would last for longer than two weeks at a time. i had stomach ulcer when i was 15. gastritis, colitis type flares etc etc, but i ignored it, until this flared completely in june and rendered me disabled. the pain is so bad. iv always had mild lower back pain when i did anything too exerting and perm hip pain due to hypermobility in my hips- they dislocate etc willy nilly, my jaw was the same so would cloick daily and lock and so on. but iv never experiecned anything like this. literlaly no break from the pain so i can relate to u.

    i was told it was all in my head as well. i couldnt have AS as im a woman, and i couldnt have Behcets as i wasnt turkish i was english. ironically enough i have italian, prussian (iranian) and polish heritage, along with irish and welsh... abs no english lol!

    iv had to give up my business unfortunately, but they wont give me ESA, im currently appealing, coz i gave up the job they are saying im not elligible despite having drs notes, hosp notes being signed off etc etc.

    its a long battle. its also a rare disease however due to the centres its actually nice to be sat in a waiting room surrounded by other behcet warriors. i went for a coffee with one lady last time it was really nice.

    its also nice for relatives to get to talk to eachother and so on. i know my mum gets a lot from those moments.

    hope your ok and keeping well!

    im on azathioprine, prednisolone and morphine etc.

    xx

  • Tigerfeet, thanks for the info, its much appreciated. I get the higher rate DLA, so I guess the reassessment will be from next October for people like myself. LizzyKarma, I totally understand what your going through. I have been through hell and at times I just wanted to die. The pain has hit me in recent years, earlier on it was one hundred percent neurological. Inability to walk, the dizzyness, nausea. I lost the ability to work out how to put one foot in front of the other. I couldnt even sit on the toilet without falling over. Migraine headaches and at the moment those headaches are back with a vengeance. If they take my DLA if will fight it tooth and nail. I am not employable anymore. I cannot be counted on to give any employer any sort of reliability or commitment. I worked every day since I left school and had a dam good job. I enjoyed the independence it gave me, the money and totally thrived on being part of a workforce. Nobody in their right mind wants this, wants the pain, the not knowing what tomorrow will bring. Anyway, that's my soap box over. I e come this far and I'm not giving up yet...

  • Hi Phoebe. My goodness and I thought I had a bad time!

    I was also told to 'live with it' (makes my blood boil when I think of that doctor).

    I had a fairly bad attack in October with similar symptoms to yours (not to the same extent though). It appears I had a 'hot spot' in the cerebellum, although no lesions.

    Welcome to the group and 'no you are not going mad'.

    Regards

    Lesley

    PS Apparently with BD the symptoms are so diverse it is so hard to diagnose, as you might have gathered. Other than one big bout in October I'm never had a lot of trouble with mouth ulcers (only small ones now and then).

  • Reading back through the above posts, I thought it might be useful to take up some of the points made - BD has so many symptoms and we don't have them all, or at the same level as one another, which in all fairness makes it hard for even the most experienced docs to get to the bottom of everything. We need to be vigilant about the possiblilty of other conditions that are non-BD related. Making sure we are being treated for all our problems is sometimes down to us. Sjogrens Syndrome can be a secondary to BD and interestingly I note that a few people have hyper-mobility syndrome, sometimes referred to as ligamentous laxity. Not medically associated with BD as far as I know, but for those of you who have it, it can be helped with physio, hydro, Osteopathy and OT input to make sure you are moving around safely and sensibly and have the most suitable aids and adaptions if they are needed. I'm UK based so can only speak for what is available here, but it the things mentioned above can make an enormous difference. Wheelchair assessments are available on the NHS and extremely worthwhile - you don't have to have a wheelchair from the service (which is free), you can have a voucher towards one of your choice from another provider. The good thing about having the assessment is that they can recommend the type of chair that best suits your needs, usage, height, weight and so on. There is usually an OT present at the assessment and that is really helpful. I was surprised to find out a while ago how many people either use the wrong equipment, or use it in the wrong way, or simply don't know what is available and that their lives could be easier, safer and less painful by utilising these services.

    Those of you who know me will be fed up by now of me banging on about the same things, but for newbie's I think it's important to know the above and also that improvements in health and ability ARE possible and DO happen.

    As well as your BD specialists, ongoing involvement with any of the services above will help to monitor that and advise when things change.

  • Welcome. Being newly diagnosed myself I have found this forum brilliant. I was scarred when I first got diagnosed but this site has really helped me.

    The people on here are lovely.

    Actually chatting to people who really do understand Behcets is very comforting.

    Family and friends are supportive but they don't really understand as they don't have BD.

    If you need to rant or have something good to report we are all here to listen.

    C x x

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